Autism Watch: 2007

Posts Tagged ‘aide

I’m going to warn you — I’m going to be very candid here. I don’t need the flames if I offend, I’ve got enough already going on, so I really hope readers can understand that this is what it’s like in this part of the community and just take it for what it is, my feelings on a sensitive topic that I deal with daily.

Before I go any further, let me just say: speech does not equal communication.

My autistic child is verbal. Very verbal. His vocabulary amazes people, even his parents, daily. That’s the good news.

My autistic child is verbal. Very verbal. His vocabulary includes a lot of words uttered, yelled, and screamed solely to upset others. He speaks so quickly, he has no filter to stop the inappropriate commentary from coming out unbidden, towards anyone, even when you least expect it. When he’s upset, which is frequent, the words become meaner than the usual ‘stop,’ or ‘shut up.’ They might wish me dead. They might wish himself dead. And that’s just the beginning.

On a good day, or in a good moment, he uses his words to communicate more properly. He tells me he has homework to do, that he wants to eat cookies, or that he doesn’t feel well. Well, let me back up a minute. He attempts to tell me he doesn’t feel well. He interprets anxiety in ways we can’t understand, so when he tells me he has a stomachache, it doesn’t necessarily mean his stomach aches. He can verbalize that something’s wrong, but can’t always pinpoint it.

When he’s upset, he sometimes gets so garbled, we have to remind him to use his words. He can go non-verbal for a few minutes or a while. Sometimes he gets so hysterical, we have to remind him to use his words then as well.

Let’s take a typical day out of our recently, newly typical kind of week. He wakes up, we play our “I Love You” game, and he tells me he’s hungry. I make him the food he wants while he cuddles under his blue blankie and watches some recorded TV. He eats, spilling a good amount on the table, and when he’s done, goes back to the couch. I’m the anal/uber-organized mom who has everything ready the night before, so mornings can go easily if he’s in a good mood. Problem is, he doesn’t want to go to school. Today. Tomorrow. Ever. When I tell him it’s time to get dressed, he can whine for a minute like any neurotypical kid bothered at the interruption to Pokemon episode #317, or he can flip out and start yelling at me about how he doesn’t want to go to school, how his stomach feels pinched or how awfully mean I am for making him go. As if it’s not already upsetting enough to have to make him go when he’s happy, now I have to make him go when he’s calling me names and says he wants to go live somewhere else.

He has no idea of the power of his words. And even if he did, I’m not sure he’d care. We work on this daily. None of his tirades are acceptable. Every inappropriate comment is addressed. But, just like any aspect of autism-related behavior, it doesn’t go away overnight. Some of it’s such a problem, it never goes away.

So here’s where it gets candid. Despite so much autism awareness, people still hold verbal children much more accountable for their actions than a non-verbal child. People still tend to act as though the words of an autistic child are willful and intentional. They’ll excuse him when he freaks out because the vibration in a ceiling light bothers his ears, but they won’t excuse him when he uses mean words. When he gags up dessert because he can’t tolerate the consistency of nuts in a brownie, they pay him on the back and offer him a chocolate chip cookie. “Poor thing.” When he says it’s a “stupid brownie and the cook should learn how to cook without nuts,” the tolerance goes away. What people don’t get is that it’s the same thing. For one behavior, he gets “poor thing.” For the other? “Brat.”

So what brings this to the forefront of my mind right now? Our respite nurse just quit. We were called by the agency and given an excuse reason that doesn’t really make sense, and she didn’t even tell us or take the time to say goodbye to our son. (Hard to say goodbye when you cancel on your last visit, though we didn’t know at the time it was the last time.) The last time she was here, BB gave her a hard time and told her to shut up and be quiet. Definitely unacceptable, and we told her she needed to reprimand him, it was okay with us, and we also talked to him about it, in front of her. We thought it was over with, and that she understood. Instead, we get a cancellation for last week, and a permanent cancellation today. The agency is working on find us a new nurse, but I have serious concerns and know I have to have a long talk with the new nurse when one is found. (And I think I broke a new record for the number of “times,” ha that the word “time” was used in one paragraph!)

But, there’s a big picture here. If I had a dollar for every time someone told me how awesome it was that my son can speak, I’d be a millionaire. Yes, it is awesome, but it doesn’t erase all the other things. It doesn’t negate a self-injurious tantrum or a book/food/toy slinging-fest. It doesn’t fix the medical issues (potty issues, rashes, headaches), it doesn’t remove the sensory issues, and it doesn’t resolve the tics, repetitive movements and obsessions that get in the way of regular daily life. And it only impedes social interaction.

If you don’t know he’s autistic and you heard him get upset, you’d think he was just an obnoxious brat with parents who haven’t taught him how to behave. Now I wonder if the nurse thought this, and I know we had an aide a couple of years ago who thought it. (And maybe a teacher in there, but that was at our ‘old’ school.) If someone has the wrong idea about autism, they don’t seem to understand (believe?) that autism is a spectrum. A child can be verbal and still be on that spectrum. Being verbal is just a skill or tool that a child has, just like some kids with autism are savants and some can easily tolerate noise and some are able to control their anger without having a tantrum. If people started to view speech in that perspective, I really think things would vastly change.

But in the meantime, there’s still a bias. I’ve had a few people be quite mean to me that I’ve had the audacity to ‘complain’ that my child has issues. “At least he talks.” Yep, he breathes, too, so I guess I should be okay with everything else?

I understand that having a child who cannot speak is heartbreaking. I can’t say I know how the parent of a non-verbal child feels, because I don’t. But I don’t think that a parent of a non-verbal child can understand how I feel either. I wouldn’t dare to make a comment about their child, so why is it fair game to say it to a parent of a verbal child? Why is it alright to diminish everything else?

So this is a bit of a rant. I’m tired of the bias, and it’s finally coming out here on my blog. Because my child has speech, he is held to a higher standard. He’s expected to behave, to use only nice words, and to not get angry. He’s expected to suddenly have skills he doesn’t have, all because he can speak. Forget the fact that he can’t interpret body language or facial expressions, that he can’t understand the whole personal space issue or that he takes everything literally, he can speak! Why am I complaining, he can talk!

Life isn’t so easy on the other side of the spectrum. Everyone should say that, and mean it.

To you professionals out there that decide you want to work with autistic or special needs children, please remember they come in all shapes and sizes. You may work with severely affected, or mildly affected. Don’t just study up on the severe, the ones that are the stereotype of autism, but the full range. More importantly, get a thick skin. If you go into the field of special ed or medicine, or anything related, toughen up. Be part of the solution, not part of the problem. Yeah, that’s so cliched, but it’s real — if you can’t tolerate a child telling you to shut up, turn in your employee ID and head home. Sign onto the computer and look for a job a field without children. Or, remember that you’re working with a child with a disability and sometimes they’ll say things that you don’t like. Remember that they’re not your children, but rather someone you’re paid to do a job for, and that job is teaching and supervising. Teach, supervise, and go home and impose your personal feelings on your own children. When you’re on the job, do the job. You don’t have to like being told to shut up, but deal with it. Don’t dump on a parent at the last minute, ruining their only night out with their spouse all week long, and don’t add to their load by refusing to come any further because their child hurt your very delicate fee-fees. Suck it up. Or, try a new career. I have a job. I don’t like everything that I hear all day long, but I shake it off. And I even get called names. Frequently. (I’m in management and I deal with the public all day. Enough said, right?) I don’t like it, but I recognize it for what it is; I breathe in an extra breath, think about how I’m going to appreciate that paycheck when it comes, how glad I am to have a job (especially in this economy) and how I can leave it behind at the end of the day…and how that nasty person is someone else’s problem then, as long as I’ve done all I’m being paid to do to try to fix things then and there. Isn’t that the epitomy of a job? Doing what you’re paid to do, and doing it well? If you have moral issues with a job, then quit, but don’t take out your inability to handle something on a disabled child.

Rant over. Maybe.

I really think it should be required of any/all people working with children to be fully trained in all aspects of autism spectrum disorder. Don’t just train people in all the nuances of working with a verbal and a non-verbal autistic child, but teach them compassion towards both. Teach them to not treat one better/worse than the other. Teach them that just because a child doesn’t physically look handicapped doesn’t mean that they aren’t. Teach them to keep their pre-conceived judgments to themselves when they’re on the job, and remember that they’re dealing with someone else’s child, a child loved more than anything, a child worthy and deserving of respect, even if they’re not necessarily able to give it at that time. They’re also dealing with a family already overtaxed, and a family, and child, who need consistency. (Symptom of autism: extreme need for sameness.) Refusing to work with a verbal child is not just a change in your schedule and a relief to your overly-sensitive feelings. It throws a wrench into the lives of several others, and can’t be easily remedied. And if it’s not something you think you can find a new way to deal with? My advice is to see above, and look for a new job. Working with special needs children is definitely not for everybody, but if you put yourself out there, do it right.

As for me, I’m on the hunt for a new nurse. This next one is going to be the unfortunate recipient of a long talk about autism, and some questions on his/her tolerance level. I’m not going through this again. In California, our budget is so far in the tank, if we don’t use our respite hours, we’re told we could lose them. But, if our nurse refuses to show, and then they can’t find someone to replace her quickly enough (or not at all) how fair is that?  But I won’t digress. I’ve already written a very long diatribe on a few things and all the while, I’ve been listening to my son complain about having to do what he sees as an inordinate number of math problems. (Who knew “regrouping” was actually “borrowing?”)  I’ve had to re-type a million words, and I’ve had to stop two million times. His constantly incessant complaining is killing my concentration, and while I do love to hear his voice when he’s not mad, he can also go on and on and on and … anyway, on and on about a topic of interest, which in between math problems is “Total Drama Island.” In that time, he could have easily finished all that math homework. So the obsessive talking also gets in the way of getting things done. (Both his and mine, but for the sake of my point, we’ll just focus on his.) And now we’re obsessing with the social issues he’s facing during his days. Maybe we’ll finish math homework sometime tonight? It is mentally exhausting. Another side-effect I forgot to mention.

In the end, sure, I’ll take verbal over non, but please don’t use his ability to speak against him, or me, in any way. I can be very verbal, too. 😉

Well, if it’s just a ‘stinking’ basketball, why are you so bent on taking it to school? Huh? HUH?

One sentence into my blog and I’ve already digressed. Then again, that’s life with autism around, isn’t it? Things are fine one second, and the next, they’re not.

This morning, things seemed to start out fine. Ds came in around 7am, after a long discussion last night that I really do mean that he needs to stay in bed until then. One hurdle overcome. The morning continues, with normal breakfast and a round of Animal Crossing with his big brother. Then the time comes to brush teeth. OKAY, MOM. Imagine his teeth grinding together through the “okay” portion of that two-word sentence, then very pronounced disgust when saying “mom.” And so it begins.

Finally, he’s downstairs ready to leave. His older sister was taking him today, and he took it upon himself to invite a neighbor to ride with us. Fine, as long as you behave and don’t give dd a hard time. “DON’T SAY THAT TO ME, MOM.” This time, no teeth grinding here, he just outright yells. Somehow it’s okay for him to yell like that in front of his friend, but it’s not okay for me to correct him. Weird logic. Dd pulls her truck around front, but by then, ds is convinced he’s taking the basketball to school. No, not gonna happen, dude. Back and forth with him about why not: you’ll lose it or it’ll get stolen, it’ll be a distraction, how are you going to carry it, it’s against the rules, and so on. He kicks at me (with a brand new shoe, no less) and then tells me he doesn’t care if he scuffs his new shoes. Finally, he takes the backpack from me, flings it at me, I dodge, he mopes to the truck. For me, it ended there…until school is over and I pick him up…but dd still had to take him. He threw a belt at her, sat and cried hysterically in the truck, then yelled at her repeatedly to leave him alone once they were in the gates. So leave him alone, she did. Came home, and so far, no call from the school. I’m not holding my breath though. That kind of anger and aggression usually means some issues throughout the day. His teacher and aide is wonderful in helping with him, but carryover is bound to happen in one form or another. Such is another day, right?

In each of my kids’ lives, I’ve had at least one day of ’11 more years of this?’ Maybe it was 8, maybe it was 4, but there was always a day where a school issue arose and it hit me that there were xx years of school left, and with it, xx years of hassle. I eliminated some of it by homeschooling, though this year I do have my 12-year-old daughter in 7th grade at a public school. So far, so good. My oldest graduated last year, and my second child will graduate from homeschool shortly, early. However, my youngest is only in first grade, and after one hellacious trial run at special education first grade, I’ve learned it’s not just the diagnosis of autism that’s the challenge, but the whole system.

Lest I seem unnecessarily negative, let me give you a bit of a run down. Last year, we had a teacher who had no experience teaching autistic kids, in any realm, and by the time we pulled him out before the year ended, we were sorry we hadn’t done it months earlier. We lost a lot of time at work, money on our attorney, lots of hours researching, studying, learning and observing, but mainly, I wondered what memories and fears our little guy was left with. He still sees the offending teacher periodically; I cringe on his behalf, and am thankful I don’t run into her. (And she still has our address and phone number, something I learned is never good — surprise visits and complaints were results of angering her and going to the principal.) We had a crash course that year that what’s the best for our child isn’t always what happens, admin doesn’t always really want to help your child as much as they may want to just shut us up and stop the cash flow, and autism awareness is still in short supply.

So what happened this time? Yes, that’s what I feel like when I tell people. Another problem. An issue “again.” It’s almost difficult to believe, at least in my head, that we could end up with two bad situations two years running, but it’s a reality. We had an aide for my son that we thought was working out. My son wasn’t always happy with her, but he’s not always happy with me even. I don’t know any kid that loves their teachers every single day, so I took what he said with a grain of salt. As an adult, as a parent, it doesn’t take a degree for me to realize that kids do that — they say things in anger, they say things without realizing the implications, and the world is more about them than anything/anyone else. For a kid with autism, this is just amplified. Again, no degree in special education or child development was necessary for me to know that. Maybe I was naive, maybe I was just stupid, but I assumed that one of the basic tenets of working with special needs kids is that you’d be aware that their personalities were affected. However, this aide took it all personally and had extreme expectations for my son. He was to be respectful, positive, non-demeaning and nice at all times. If he wasn’t, she refused to tolerate it. That is a quote. She outright asked me if his rudeness and lack of respect didn’t drive me crazy..and that was probably one of her nicer comments. The conversation digressed from there, and it was quickly apparently that she not only didn’t like my son, but she didn’t understand him or autism in the slightest…and she felt it was within her rights to tell me she didn’t see autism in him at all, only behavioral issues. (Uhm, hello, autism book, research, training 101, anyone?) Not only do I have an excellent memory for verbal conversations, particularly those that are about one of my kids, but my older son (almost 18) provided an excellent witness, so I headed to the office immediately after. He now has a new aide. (I am blessed, this year, with a great district and admin.)

Why am I sharing this? I want people to be aware and alert. I want others to know there is always a need to check in, get to know your child’s aide, stay in close contact with your child’s teacher, and ask questions. And request training. Ask that your child’s aide be trained in autism overall, and more specifically, the details about your child and his/her level of autism spectrum disorder. I had already talked with school staff the week prior to this situation, and I’d been under the impression my child was simply being difficult, the way he is when he gets comfortable with someone. If I hadn’t approached the aide directly, to explain that she can talk to me, I’d not have known all of this. Where would we be then? Blaming my son? Dealing with what? God forbid, being the next case of an aide filing charges for assault if he accidentally had hit her foot when he pushed out his chair?

 That day, I admit to thinking “Eleven more years of this?” I want my son’s school years to be happy and successful. If he was just there for educational purposes, I’d homeschool him but he needs so much more. I do worry now, more than I did. If these special needs aides/teachers have already proven to me, by first grade, that not everyone who goes into this field is equipped for it, I’m scared. Which leads me to my next question, why be an aide if you expect a child to be perfect? Why think your few hours a day with a child qualifies as reason to question the diagnosis nine other doctors/specialists have applied? If someone can’t handle bad attitudes and tantrums, take note: you aren’t qualified for the special education field. If a parent has to worry more about your personal feelings and you forget the needs of the child over your unrealistic expectations for their age, you aren’t qualified for the special education field. If you think a parent is going to agree with you and say “I know, what a brat,” you aren’t qualified for the special education field. And if you get so mad you have to start taking jabs at the child, such as talking about intelligence, you shouldn’t be in the education field, period. Don’t take any babysitting jobs either.

Vigilance is my new motto. (It used to be ‘never pay full price.’ How things change.) I want to be cooperative and understanding towards those working with my son, but bottom line, my son comes first. If someone can’t understand that, well, they either aren’t a parent or pity to their kid(s).

My daughter’s looking for a job as an aide. She’s studying special ed. in college, and she lives with her brother every day. She also passed the test. Poof, she can be an aide….she’ll be good at it, but at some point, the requirements to be an aide should be more. Raise the bar. Accept nothing less for our children.

Tags: , ,

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 34 other followers

Twitter Updates